Living with an Invisible Diagnosis

This is sitting heavy with me right now, so I’m sharing it, because I know I’m not alone. I want others in similar circumstances to know they’re not alone either.

Invisible diagnoses. I have many, and I know others do as well. For me, it’s not hard to recognize the ones who suffer or even the ones who pretend they don’t simply by how they carry themselves in their day-to-day lives.

The hardest part is that unless you’re with people who share similar experiences, most don’t understand. Some accuse you of not being in as much pain as you say. You hear comments like, “If it’s so debilitating then why don’t you just get on disability?” “You switch jobs so much, you’re unreliable.” “You’re the reason for financial crisis because you’re flaky with work.” “Are you sure it’s not just in your head?” “Your pain levels don’t match, so it’s not what you think.” “Is that even a real diagnosis?” “You’re too young, I don’t buy it.”

These comments may surprise some of you, who would say such things? But others reading this will bow their heads, because they’ve heard those words. And some of the people who’ve said things like that might feel shame and guilt as they read this. That is not the purpose of this message. I’m not here to shame or attack anyone. Other people’s emotions are their challenge. If they feel guilt or shame, they should sit with it, take accountability for the ignorance that caused harm, learn from it, and heal so they can do better. Better for themselves, and better for others. It’s a challenge, not a problem.

In turn, we, the misunderstood, must take accountability for how we feel. We have to understand, with love, that sometimes people speak from a place of ignorance. We are not responsible for their lack of compassion, but we are responsible for how we respond.

Part of that means sitting with the hurt and anger that rises when those comments are made. Yes, easier said than done. Yes, it takes practice. But beneath the anger is hurt, the root emotion. Anger is the outward shield, the smoke released from the burning embers inside. That anger is there to help us draw lines. It exists to signal where a boundary belongs.

Boundaries take strength and courage, especially if trauma conditioned you to be a people pleaser. But they can be done. They must be done. Boundaries conserve your energy. They shield what little strength you have so you can use it to keep going.

I believe anger is an emotion that has been suppressed in society because it threatens those who want control. People who control others feed on fear, shame, and doubt. Comments that trigger self-doubt are designed to weaken your defense system so you don’t protect yourself. When you don’t protect yourself, you are easy to control—emotionally, mentally, and energetically. That’s the small-scale version of what we see in the world.

I believe family and friends should challenge you to do better, to not settle, and to refuse stagnation inside a diagnosis. They should encourage you to be proactive in your healing journey—but the same is required of you. A diagnosis is not the end. It’s information. It’s feedback from the body. Doctors diagnose, but not all doctors heal. So you research. You take accountability. You don’t give power to the diagnosis, you listen to what your body is trying to teach you.

It means making better choices. Giving up addictions. Changing your diet. Moving your body. Some diagnoses require physical movement to keep the lymph system healthy, flush the liver, and support the body in doing what it’s built to do, heal. There are alternative methods and medicines worth exploring, because sometimes prescription drugs only treat symptoms, not root causes.

Be proactive. Do not surrender to stagnation. Complacency is a killer. Rolling over and saying “Well, this is my life now” is a choice—a choice to stop fighting for yourself. A choice to let the diagnosis run your life instead of learning how to live with it.

Some diagnoses aren’t curable. I have a couple I will manage for the rest of my life. But I will manage them. I will not let them define me. I accept the pain I wake up in every day, but I refuse to drown in it. I know I will have bad days for the rest of my life and that’s okay. I will not let them poison the good ones. I will not punish myself for being human. I won’t feel guilty for enjoying something sweet once in a while. I won’t apologize for needing to rest.

On the other side of this, there’s something else that needs to be said: part of setting boundaries means not entertaining the constant complainers, the ones who complain but never change, who drain everyone around them, who choose victimhood over growth. This is where I lose sympathy fast. There’s a difference between genuine struggle and constant excuse-making. Learn to tell the difference. Protect your energy. Energy vampires will take and take and take, and they will never feel bad about it. So protect yourself. You matter too.

My heart goes out to the people who show up every day despite everything they’re carrying. The quiet fighters. The ones who still hold compassion even though others have failed to show it to them. The ones who smile through pain. The ones who don’t make excuses. The ones who are trying. Really trying. Even if no one sees it.

To you: I see you.

You don’t deserve cruelty or doubt or passive-aggressive judgment. You don’t deserve to have your pain dismissed just because someone else can’t understand it. You don’t deserve to be treated like a burden because you’re fighting a battle no one can see.

You are allowed to set boundaries. You are allowed to cut off people who hurt you, yes, even family. You are allowed to protect your peace. You are allowed to say “No more.”

You are a warrior not because you never break, but because you never quit.

Some days surviving is the victory. Rest when you need to. Breathe when it’s heavy. But never confuse resting with surrender. Never apologize for protecting your energy. Never apologize for doing what you need to do to stay alive, physically, mentally, emotionally, spiritually.

Stand tall in who you are. Surround yourself with people who get it, people who don’t mistake silence for weakness, who choose healing over self-pity, who know the difference between excuses and effort.

Be understanding of ignorance, but never tolerate disrespect. Set boundaries so strong that even the ancestors feel them and nod in approval.

Learn your body’s language. It speaks to you for a reason.

Love yourself without conditions. Understand yourself without judgment. Forgive yourself without delay. And live, truly live, without carrying shame that was never yours to hold.

You are not alone. Keep going. You’re doing better than you think.

So much love. 💕